Functional Neurological Disorder (FND) - When Symptoms are Real but Tests are Normal...

What happens when a child experiences seizures, tics, weakness, paralysis or persistent pain—but hospital tests do not reveal an identifiable medical cause?

That does not mean the symptoms are imagined or that nothing is wrong.

In this episode of Early Intervention Matters, Dr Inyang Takon speaks with child and adolescent psychotherapist Sagal Hassan about Functional Neurological Disorder, commonly known as FND, and related functional somatic symptoms in children and young people.

FND can be frightening and confusing for children, families, schools and healthcare professionals. A young person may experience real, disabling physical symptoms while repeatedly being told that their medical tests are normal. This can leave families feeling dismissed, anxious and unsure about what to do next.

Sagal explains the important relationship between physical symptoms, emotional wellbeing and chronic stress—without reducing the condition to being “all in the child’s mind.” She and Dr Takon also explore why adolescence can be a particularly vulnerable time and the crossover between FND, neurodivergence, anxiety and school attendance difficulties.

In this episode, we discuss:

* How FND can present in children and teenagers
* Seizure-like episodes, tics, weakness, paralysis, fatigue and persistent pain
* Why normal test results do not mean that the symptoms are not real
* The relationship between physical symptoms and emotional wellbeing
* FND in autistic and ADHD young people
* Why some young people suppress or struggle to identify emotional distress
* The impact of repeated medical investigations and feeling disbelieved
* Why psychological support should be introduced early
* Supporting children who are struggling to attend school
* The importance of flexibility, routine and maintaining some normality
* How parents, schools and healthcare professionals can work together
* What can help a child or young person move towards recovery

ABOUT SAGAL HASSAN

Sagal Hassan is an ACP-registered Child and Adolescent Psychotherapist. She works with children, teenagers and families experiencing neurodivergence, chronic health conditions, functional symptoms, school attendance difficulties and complex emotional challenges.

She works at The Soke in Chelsea and also has an independent child and adolescent psychotherapy practice.

CONNECT WITH SAGAL

Website:
https://www.sagalhassan.co.uk/
Child and Adolescent Psychotherapist & Consultant
Sagal Hassan Child & Adolescent Psychotherapy
Highgate | Online | Harley Street


E: info@sagalhassan.co.uk

W: sagalhassan.co.uk
LinkedIn: linkedin.com/in/sagalhassan


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Hosted by Dr. Inyang Takon, Consultant Neurodevelopmental Paediatrician, UK. New episodes weekly.

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This episode is for general educational purposes and is not a substitute for individual medical advice, diagnosis or treatment.

Transcript

SPEAKER_00 0:03

Welcome to Early Intervention Matters, a podcast that helps parents, teachers, and health professionals understand the diagnosis, treatment, care and support of children with autism, ADHD, stress, and other neurodevelopmental challenges. Your host, Dr. Ai Yang Catholic, is a consultant and neurodevelopmental pediatrician, and she will provide insights through interviews, answering questions, and breaking down complicated topics. By sharing stories from parents and professionals in the field, we hope to make sense of what can be an overwhelming topic. Early intervention is crucial for children with developmental difficulties. Yes, early intervention matters. And now, here's your host, Dr. Inyan Tagon.

SPEAKER_02 0:56

What if I told you that a child could have seizures, presenting hospital with seizures, with ticks, with what looks like very serious ticks of movement or even paralysis? And the child or young person goes to the hospital, has all the tests necessary, and the doctor at the end of it says to you, there's nothing wrong. All the tests are normal, so everything is fine. That can sometimes be somehow good news in one end, but somehow give you more cause for concern. Well, it's not that there's nothing wrong. There isn't anything organic they found, but doesn't mean there's nothing wrong. And that's the discussion we'll be having today around functional neurological disorder, which is fairly common in children and young people, really misunderstood in many areas. So today I'm lucky or we're privileged to have Sagal Hassan, who is a psychotherapist and she's got a big interest and she's a specialist in functional neurological disorder. We'll be having this conversation. I'm so pleased that Sagal has joined us on any intervention matters episode. I met Sagal during a course that we both did, a digital healthcare leadership course, as we crossed paths during that course. And I was really pleased when I found out that Sagal was doing something that is a big interest of mine. So welcome, Sagal, to Early Intervention Matters Podcast. And we're so pleased to have you here. So we'd like you to introduce yourself to our audience.

SPEAKER_01 2:37

Hello, thank you, Inyang, for that lovely introduction. I'm Sagal Hassan. I'm a child and adolescent psychotherapist, and I work specifically with patients who are neurodivergent, but also where there's a crossover and there are some chronic health issues, also a cluster of conditions that we call functional somatic, which means that there are physical symptoms that are persistent and we don't necessarily know the cause and we don't necessarily know why they happen. And there's a psychological dimension to this as well. So those are the groups of patients I mainly work with in private practice. I worked for a number of years in the NHS in a specialist service where we help patients who had these functional somatic disorders and also chronic fatigue syndrome and long COVID. So I'm very interested in the relationship between the mind and the body, and not as two separate entities, but as one thing. And I think that it's always important to have these kinds of conversations and talk to other healthcare professionals or medical professionals so we can think together about how best to work with families. And I think, as you said in Yang, it's a very misunderstood condition. And most functional somatic conditions are very poorly understood. So again, this is really helpful for parents and families who want to find out more.

SPEAKER_02 4:15

Yes, definitely. And and just to say to our audience that professionals like Sagal are really hard to come by because we this is the next step we usually need help for our children and young people. And in the NHS service, it is quite difficult to actually find people to deal with that. So that's why I'm so pleased that Sagal could join us. To start with, functional neurological disorders, as you probably heard us saying, um, it does account for a significant share of pediatric neurology presentations, remains poorly understood. It's called, it's over the time it's gone through several names, and I'm not going to try and bring them up here because it's gone through several names. The essence of this conversation is to make it more practical rather than it being a lecture. So we're going to talk about more of the practical presentations. So basically, children present with very disabling symptoms, and I'm sure there are families listening, probably who know of someone, or maybe your child could have experienced this. But it's not one thing, so it varies in the presentation. So it could be motor problems where there could be weakness or poor movement on one side, and you know, the child is having this very disabling symptoms, they can't move, or sometimes they might be shaking one part of their limbs continuously, but they've checked and the doctors have checked, and there's nothing that they can actually find as a cause to explain those symptoms. This is the common thing is you'd find a child or person who's gone through several investigations, probably referred to several doctors, referred to specialist teams. They've had lots and lots of investigations to try and understand whether there is an underlying cause for the presentation. Sometimes it could be in the form of seizures. So people could have convulsions where you know it's been checked, it looks very much like seizures. The child or young person seems quite disabled by it. The seizures can come on any time, and they've gone on to have all the investigations and nothing has shown up. Sometimes it could be pain, uh, you know, that could just be present, and you know, they've checked and you can't find what is causing this pain. Again, investigations have been done, but nothing could be found. It could be abdominal pain, it could be head pain, it could be limb pain. And it's sometimes it could even come in form of ticks. So we've been seeing a lot of children and young people with what looks very much like ticks, and people get worried whether they are having Tourette syndrome. And we've seen several referrals to the clinic for what looks like ticks and tourette, but doesn't actually follow the typical pattern of the natural history of tics. This comes on suddenly, and the child or young person could continue having these continuous symptoms that go on for a longer period of time, which is not the pattern for usual ticks. So usual ticks are very brief, they come and go quite quickly, and they don't cause the kind of protracted presentation that you would get. Maybe a child having ticks for hours sometimes. So the child could have all the symptoms, and naturally, as parents, we'll be very worried about a child who is presenting this way, and the parents sick referral to the hospital, so they're seen by the doctors, seen by the specialist, they've had different investigations done, and it can be quite frustrating for parents because, as parents, you wonder, oh, what's causing this? Because it's happening again and again. Sometimes a young person may not be able to go to school and may not be able to do things that they're supposed to do. So that's a nutshell, is what um in those kinds of situations um when there is no understood identifiable cause, but the child is still distressed by it and impaired, that's what results in the diagnosis. That's what functional neurological disorder looks like. So we're going to be talking about this. Um and they it we do we're seeing increasing numbers of referrals. Sometimes they make up to a fifth of children admitted for seizure management. But one of the things that can trigger this, which I'm sure Sagar will talk about, we'll talk about some of the things that can trigger this. We'll talk about how to deal with it, because when you go through this process, you want to be able to use the right approach. And these are the things, this is where Sagal comes in, because as at this point, specialists as medics, when we've done all the investigations and we've said to the families, you know, we can't find any organic cause, we can't just send people away. We we we need to rehabilitate them, we need to get them to understand this. So this is where we at the point where we refer to SAGO. So it's with this I'm going to start the questions about the functional neurological disorder. Some people just call it F and D. So you would probably hear lots of people say FND. It's still the same thing, it's functional neurological disorder. So, Saga, with your experience over the years, because you've had experience in the NHS service and privately, what what ages do you typically see the children present with? And does it look different in younger children and teenagers?

SPEAKER_01 9:50

It might be just because of my clinical experience. I worked in an adolescent service, so of course, all of the patients I saw were adolescent. I've seen a couple of cases in private practice, but I can speak more for how it emerges or looks in teenagers. I guess when when life gets more complicated and there are more things to juggle, you tend to find young people have more difficulties physically and mentally and so on and so forth. So adolescence seems like quite a typical time for these sorts of symptoms to emerge along with emotional problems. And also, there's a big, big link with, I don't know if you experienced this, Sin Yang, in your work, with children who present with functional symptoms, but neurodivergence, there tends to be quite big crossover. So there is the demands of being a teenager, GCSE exams, there might also be autism or ADHD in the picture, and all of the other things that happen during adolescence, hormones and bodily changes, and it's kind of the perfect time for complex difficulties to come up. So I find that things, if they haven't already been progressing, get a lot worse in adolescence. So I would imagine with a lot of functional somatic patients, there would be difficulties that happen earlier in life, but things get a lot worse when life becomes more demanding. I don't know if that's yeah.

SPEAKER_02 11:37

Yes, and I I would say that that's about the ages that we tend to see more of um the young people presenting. So in my epilepsy clinic, I get to see a lot more of the adolescents, and sometimes it might be when they've just started um secondary school or you know, trying to cope with the challenges. Thank you for bringing up the the pointer with neurodivergence because sometimes it's when they have presented with functional symptoms that we actually explore and then find that that some of them are neurodivergent, and sometimes that's when we've been able to say, go and have an assessment for autism, or you know, a lot of times. It's not unusual. If I think back at the young people I've seen with functional symptoms coming in for um ticks, for coming in for epilepsy. A lot of the young people have been in that adolescent group when they've come in. And when they when we've been exploring what has happened and exploring their history, it's at that time sometimes we're picking up for the you know for the first time that because many times families would not have been have picked up the neurodivergence path, but it's at that time that when we are screening that we've actually picked up that the young people may be neurodivergent and they would need further diagnostic assessment. So thank you for bringing that up. Um, and what kind of presentations, what's the commonest presentations that you see in your practice?

SPEAKER_01 13:18

Again, I as I was working in a specialist service in the NHS, most presentations were chronic fatigue type. There were quite a few long COVID cases and obviously FND. And as you said earlier, really helpfully, the names keep changing and it's difficult to keep up. And before it this group of conditions was called medically unexplained, but then now that's not a preferred term because it has so many connotations that aren't helpful to patients. And then there was also somatic symptoms, which also is only part of the picture. So I think we're getting we're getting closer to something that represents these conditions more accurately, but it's still difficult. I find the language really quite tricky, and then functional neurological disorder is one of the conditions within the functional cluster. So I did see quite a few, I'd say just after COVID, these kinds of presentations started coming up a lot more, and patients would come with quite general symptoms that could have been thought of as long COVID or chronic fatigue. I think in some parts of the world there was more progress, but I think in the UK we're quite slow to catch up in relation to FND as a diagnostic category. And there are still lots of healthcare professionals who don't really know much about it at all. I would say chronic fatigue and functional neurological disorder are the conditions that I'm most, I guess, confident in terms of treatment and understanding the kind of neurobiological causes and what's going on in the body. But I find from a psychological perspective, I can work with lots of different types of functional somatic conditions like chronic pain and also gastro symptoms, unexplained gastro symptoms. So I would say that the psychological approach can apply to the whole group of conditions.

SPEAKER_02 15:27

So thank you. You said something about somatic functional uh the somatic presentation. So for the benefit of our audience, do you want to go a bit more into detail about how what kind of symptoms each of these may present? So that's where what we want is for families to be able to be aware of this kind of symptoms so that they they can pick it up.

SPEAKER_01 15:52

Sure. So this is where, as you know, in Young, it gets really complex because at the beginning, a child might present with fatigue, they might not want to leave bed, they might say, I'm too tired to do this, I'm too tired to tidy my room, I'm too tired. I'm talking about like chronic fatigue type symptoms here. And they might be so exhausted, and of course, a parent would be concerned and they'd go to the GP, and the first thing that would happen is the GP would take blood, they'd try and see if there's some sort of organic cause. So at the beginning, you it wouldn't be the first thing that you think about. It would be, oh, there must be something physical going on. And the same, same with FND, you a child might have sudden tingles or numbness or paralysis of a limb, or like your patients in your clinic, kind of epileptic seizures or epileptic-like seizures. So the first thing that a parent thinks about is the medical kind of picture and what's going on in the body. So usually it would almost be like the last thing that you think about after everything else has been explored. So, like you said, a lot of patients might come to you at the beginning with some of these symptoms of FND, and some of them look like epileptic seizures. And then when we f when we find out that they're not epileptic seizures, then that's when we think about FND. So I think that the way I'd approach it with parents is after they've gone through all of those kinds of investigations, and there's no cause that can be found or known about medically, then we would consider your child's general mental psychological state, and whether or not that might be coming into play, or again, neurodivergence, whether or not that might be part of the picture. So I would say to parents who have put their child through lots of tests and visited various doctors for different professional opinions and who've been told that this could be a functional condition or FND, that the first thing to look out for, I guess, would be mood-related symptoms. So, do you think that there might be an aspect to your child's illness that is linked to low mood or anxiety or neurodivergence and to actually really take those seriously, not kind of as a replacement for any holistic medical support or further investigations, but as something that is really important in their treatment and in their recovery. And a lot of times parents might find it really hard to think about their child's mental health. They might see it as being fobbed off by doctors, or the doctors are saying that it's all in my child's mind. But ultimately, that is not what any doctor should be saying. But it should be kind of a two, a two-pronged approach where you think about physical rehabilitation, physio, sleep, diet, all of the important things that a young person needs to develop and grow in a healthy way. But then also the psychological aspects can't be the very last thing to deal with. Because even if even if there is one day a test that discovers that your child's condition was a type of neurological condition, there would still be a psychological impact. So I think from the very beginning, there should always be some thought around how a child's symptoms affects them emotionally. I don't think I answered your question. You have one.

SPEAKER_02 19:59

No, no, you absolutely did because what I was doing there was actually reflecting on the way that we manage it in the hospitals. And I think you touched on something where you said it's almost as if the psychological aspect is usually on the bottom drawer, and people start thinking about that at the end, whereas it should be something that should also be explored at the same time that we're exploring the physical aspect. And I I don't think that's being done as well. And I agree with you that there's a lot to be done for how the doctors and the medical profession explore this with the children and young people, and because sometimes that possibly doesn't help the journey where we've looked at until all the tests are done before we start considering the impact, because then they would think, oh, is it because you said you can't find anything? Then you're thinking that it's psychological rather than we're looking at everything. And the other thing you said is that sometimes when you're asking about the mental health of the mood, it can be difficult for parents to actually say that. One of the reasons I think is because sometimes the children are not really overtly showing that at home, so parents are not really knowing the extent of the mood, especially in girls, which is what I've found that the girls can look absolutely fine at home. And I agree with you when other parents about is there any mood problem? Is there any anxiety parents? It's the number of parents have said no, there isn't anything major, whereas that young person on a few occasions are undergoing quite a lot of um emotional and mental health problems, which they're internalizing and not um really bringing it out. So the parents are not aware of how much they're going through this. And I don't know whether this is something that you have experienced yourself.

SPEAKER_01 21:58

Yeah, absolutely. I think. I think that one of the ways we think about functional somatic conditions is that there is this physical and psychological aspect, but they're not two separate things. They're can they're very much linked. So we all know how when we're feeling unwell, that can really affect our mood. So we can feel when we feel sick, we feel lethargic. When we feel lethargic, we feel a bit helpless and vulnerable. And this can trigger low mood in someone who's quite resilient normally. So physical illness affects everyone on an emotional level. And this group of young people are more likely to suppress, like you said, suppress these feelings or these thoughts that they have and not share these with parents. So they end up had holding quite a burden by themselves. And the more they hold in, the more they bottle up, the worse their physical symptoms become because chronic stress affects every aspect of your your health and your body. So it's kind of a it's a vicious circle almost. Then the young people who are the least likely to reach out for emotional help or talk to parents or tell parents how they're feeling, and then they end up dealing with it all by themselves. And then that makes that puts pressure on the body, and that makes physical symptoms worse. So when I say linked, that's what I mean. I don't mean that trauma or mental health issues cause functional symptoms. That's not what I mean at all, but that they are both like bidirectional. So they both have an impact on each other, the physical symptoms and the thoughts and the emotions. And yeah, I I don't know if that's something that's okay.

SPEAKER_02 23:55

So to take us through, so when you get a referral for a young person who's gone through what's usually the pathway which you start working with them? How do you work with them?

SPEAKER_01 24:08

So sadly, like you said earlier, I'm almost the last person who's involved in care. And by then, I think that so much has happened that has not necessarily been helpful for the child's emotional well-being. For example, multiple tests, meeting multiple different professionals, hopping from hospital to clinic, parents are understandably very, very anxious and they really want to find out what's wrong with their child, what the cause is. So sometimes when one service says this is functional or this is chronic fatigue syndrome, it's difficult for parents to take that in. So they might go not just for a second opinion, but a third and a fourth and a fifth. So by that time, a young person might have had quite a traumatic medical experience and various professionals in and out of their lives, which again is not helpful. Having a long-term relationship with a doctor is really therapeutic, I think. And jumping from doctor to doctor has the opposite effect that family having to explain everything all over again, the child having to think, is this someone I can trust? And then by the time they do establish some sort of rapport onto the next, onto the next doctor or whatever. So I think that having early intervention, early intervention matters, in terms of psychology is so important because it means that someone will be there to help the family think, stop and think whether or not pursuing more tests or investigations would be helpful or having a break so the child can have a bit of a normal life. That's not to say that you never go back to a doctor for a test again, but they might just need time to focus on something ordinary like revising for their GCSEs rather than undergoing lots of tests. So sadly, I am the last person by that time, and this is both in NHS and private practice, quite a lot has gone wrong in various professional networks. Relationships with the GP might have broken down, relationship with school might have broken down. Generally, there'll be quite a lot of there'll be problems in the system. So there's a lot more work to do. The psychologist or psychotherapist also needs to work with the parents and the school and the professional network. So anyone involved in your child's care and as well as the child, instead of it being a kind of thing that you do at the beginning, where the therapist can work with families and the people around them, the people helping their child from the very beginning, that's that would be the ideal scenario.

SPEAKER_02 26:59

That's really important, and I think that's really helpful for me as well, who is seeing the children that it should be um the psychological, we should think early about bringing in, you know, the psychological aspects well, doesn't mean that you're not still doing this test. But sometimes you might find even in the process of them accessing that that they begin to feel better within themselves. I think one of the things that hinders people, definitely in my experience in the service, is always the is how to access the service for them. Because when we've referred to our generic CAM service, they turn them back, they say, no, we can't see them. And then that gets even more frustrating for the parents and the child because they feel they're being rejected there. It's always a very, very difficult um thing. And I can say that even where we work, we don't really have that support for a psychologist within the service or psychotherapist within the service to actually do that aspect of work, which then means that the child suffers even longer and doesn't really get access to those services. And like you said, a lot of professionals do not know much about you know F and D. So if you're not trained in it or if you don't know about it, then how are you getting in to actually support the child with that? And so when you go through sessions, do you on average how long do you keep seeing them?

SPEAKER_01 28:38

So I tend to find that because a lot of the time these young people have really complex external lives, like I explained, and there is usually a history of trauma. I don't think I've actually met, I don't think I've had any patients with FND who have no trauma history. And by trauma, I mean this could be medical trauma early in life, they might have been in and out of hospitals, a toddler, but it could also be psychological trauma, it could be aggression at home, it could be uh even sexual abuse. So that's almost always there, but it takes time to unravel because the family are often so preoccupied with what's going on with their child and their child's health, understandably, that we almost forget about all the other things that happened before. So that takes it takes a lot of unpacking, I think, to get to a point where a young personal family can trust you enough to start talking about other things that have gone wrong. And also there's always like a defensiveness, even when I'm talking about functional somatic conditions, I even feel myself being very careful with my language because I know that the families I'm working with feel very dismissed or blamed. So as soon as you start talking about trauma or early history or attachment, parents might feel blamed. And I think rightly so. There are some professionals who don't know enough about these conditions and might just assume trauma is the reason. Yeah, which is not what I'm saying and not what you're saying, but having these conversations in a sensitive way is really important so that you can build trust. And that's why I end up having to work with families for like a year, two years, three years, even, because things are so fragile that building trust takes time before we can actually start the therapy. And the young person also needs to trust that you believe them, and that takes a long time because a lot of young people are used to professionals saying that they believe them, but they sense that they don't believe them. They don't believe in their symptoms or their pain or their fatigue, and they feel like there's a lack of empathy in healthcare professionals. So they anticipate you're gonna be the same. And yeah.

SPEAKER_02 31:13

Well, that's that's that's so important because we never see the other side of how they present when they come to see you. So when we ask that they should be referred, we never ever know what is going on on that part of the journey, what happens, and and I completely agree with you. This is an area that many professionals don't know much about it. They need to know. And if we think about the number of children that are presenting in hospital and how many people they're coming in contact with and how they're being treated by different professionals, I think sometimes that can reinforce their symptoms as well because if the experience, the medical experience is negative, that's just going to reinforce the the symptoms. So it's so important that you know professionals are educated about this. Um what about FND in children or young people who are neurodiverse? Do you have a different experience with them or do you see a different pattern with them?

SPEAKER_01 32:18

I think this is just anecdotal, but perhaps there's more of a vulnerability to F and D if a child is neurodivergent. I I I wonder if there are research papers on that. Do you know? Do you know if there have been any studies?

SPEAKER_02 32:33

There I haven't seen any, you know, and like you said, yes, they've noticed that, you know, they are there's quite an increased prevalence on in them, but I don't know what the exact causation is. But like everything they've picked up, they're higher in girls, they've picked up that they're um higher in children who are neurodivergent, and that's why screening for neurodivergence when you see an FND presentation is quite is quite high. And I think that if you think about it, they will be anxious already, they're prone to anxiety, and their anxiety again can reinforce those symptoms, especially when they get into that loop. Many of them, there would have been lots of things, like you said, about that time that is actually reinforcing those symptoms as well around the adolescent period, which you know affects their coping as well. Certainly, that's what I've seen in the young people I've had to deal with, is that there's a lot of other factors. The school is too much, the environment is too much. Um, you know, so there's there's a lot of all these sensory issues that is overloading them and it's just worsening um their presentation. And that that's that's what I've noticed when I've had some girls with that, uh some of them had to, you know, stop school. Just be off school for a while.

SPEAKER_01 34:02

So that's quite a big thing, isn't it? The crossover, school attendance difficulties, neurodivergence, and functional conditions. It's just they almost come as a cluster, like where you see FND, you will see school attendance issues. And yeah, I I think that there, yeah, the increased demands in adolescence, but also feeling like the school don't understand, school don't believe, then young people can often feel like teachers aren't empathetic or teachers, they're just skiving or trying to bunk off school. And then in terms of neurodivergence, young people can be less emotionally aware, less aware of how their emotions are happening, like how their emotions are presenting might be more likely to happen physically, and then it might be difficult to make that link. The link that allows us to understand the the this dizziness is anxiety or panic. The language, the emotional language sometimes isn't there for some autistic young people. Yeah, so that might mean that the FND symptoms get muddled up with like anxiety or panic. So things, yeah, things can get quite muddled. And I also think autistic young people are less likely to have the confidence to ask for help, yeah. Less likely to see their distress as worth worthy of reaching out to a parent, a teacher, or someone they trust. They are also much more likely to suppress their emotions or distress. And again, this means that they can show distress through their body, but also it can make their physical symptoms worse because suppressing emotions leads to chronic stress.

SPEAKER_02 36:06

Yeah, so you can see where the whole thing becomes even so difficult, um, you know, with the children who are neurodivergent experiencing this. Actually, one of the young people that I picked up with um with FND who was presenting with um presenting with a lot of pseudo-seizures, you know, non-epileptic seizures, and she had been having that for quite a long time. In fact, she had been having treatment for epilepsy from another sector. But the so she was then transferred to my area and all that. Again, neurodivergence, we had to work through things, and part of those episodes were definitely FND. And like you said, there was trauma associated with that episode as you know that as well. But again, one of the things we struggled with is actually accessing the therapy for them. So it I think that then makes things even more difficult with getting them the right place to go, where okay, for some who have come to terms with the fact that okay, there's nothing organic, but then you need you need therapy on you know, to get that rehabilitate that young person. We found that that without that therapy, it just keeps going on and on and on and on and on. So, what what would you say um the role of school should be when um supporting children with FND? And when you work with schools or when you lise with schools, what do you tend to do?

SPEAKER_01 37:48

I think that schools tend to try their best to help and support a child, but when when something complex is going on, it's so difficult to help a child in the way that they truly need to be helped and deserve to be helped because there's a whole class of other children, many of whom might have needs to think about. So I think for whatever reason, there tends to be less empathy towards a patient, patient group or population whose condition is functional because people can't wrap their heads around it. So I think schools can be tricky to deal with. Um might again label a child as a problem child because of their attendance, and there can often be quite a difficult relationship between school and the family. I found I think that it's really important to not apply so much pressure around attendance, attending school when there's literally a health issue going like that. Kind of takes priority, I think, the child being able to get back to good health. But at the same time, there needs to be some encouragement, so not like you can you don't have to do any learning ever again, or you have to attend school like everyone else. Then there needs to be some sort of a flexible approach. So that could be having some online learning at home, but also attending school a couple of days a week. There could also be schools could also, I guess, suggest other provisions like local authorities have provisions where they can let young people attend schools or units that are specifically for people who have issues with school attendance. That can be quite helpful being in an environment where you're not the only one. And also some psychoeducation can be really helpful. So if there's a school counsellor or Senko's got some training in mental health, psychoeducation with the family around not applying pressure at home or academically, also in terms of attendance and trying to encourage some sort of self-motivated interests or hobbies and learning outside of school, I think is really important. And routines as well tend to go by the wayside when a child's not attending school. So I think that school's checking in or having someone who checks in with a young person even when they're not attending, just to see if they've been keeping up with their homework or if just to keep them linked to school and so that they still have a sense of a routine. I think that's really important. Well, thank you so much. Thank you. How would you how would you how do you work with schools? I'm sure that you get lots of requests for yeah, supporting with the HCP is is really important.

SPEAKER_02 41:02

I think I think we always have this difficulty because we do not have the I think once you don't have the strong psychological aspect to support the child, it's always so difficult because once these schools hear that, you know, we've looked at this, you know, the child needs to be supported, there's no organic cause in their mind, and exactly what you said, schools look at it as well. There's no organic cause, then we need to be getting you back in. I think what would really help if we had, you know, someone like you, say the young person liaison with school and working with them, because as you said, you know, a lot of people don't know about functional neurological disorder. A lot of schools don't understand it. And so when you're trying to explain to them why this young person actually they don't understand it, what they can see is black and white in the sense that there's nothing there, it's you haven't gotten you know a diagnosis. So why can't you get back to school? And I think this is where we really need to do a lot of work with education. I think we do need to do a work with educating schools, educating the public, medical professionals, everybody, everybody needs to understand functional neurological disorder and how impairing it is. And I agree with you, there are still some professionals who are not completely fully there with the understanding of that process, and that's why I feel there is still a lot to do in terms of the education. I think when people understand that, because what they would say, okay, we understand epilepsy, but if this is not epilepsy, then what? Or we understand if you have to rets or whatever, but if this is not tourette, then why are you doing this? So it's still something that needs a lot of education because if the child is well supported at school and they get that positive feel from school, I think it will go a long way to help that child rehabilitate as well. And that's my that's what I've experienced is where we find schools being supportive and working with families, you know, and professionals. You find that the children make better recovery as well. So, what tends to predict a good outcome? So we've talked about the fact that the earlier the intervention, the better, and that's one thing that we take from today is that the intervention should start early, not later, because that doesn't help the young person. So, what tends to predict a good outcome versus a harder recovery?

SPEAKER_01 43:43

I guess parents need psychological support, and I I think just like what you said about schools being on board and having a good relationship with them, doing liaison with them helps with good outcomes. So does parent support or parents. Parent counselling. So when I worked at UCLH, we always offered support to parents of young people with functional disorders because it's so difficult for them to. I guess there's a there are a lot of trust issues. And without that parent support, then it can lead to, like I said, the dropping out of treatment, moving on to the next clinic or another specialist. I think parents need to be able to trust the people they're working with. And that's where this type of psychological work comes in. And also, parents really value psychoeducation around how to manage this. Like, how do I manage my child not wanting to go to school? Should I be pushing them? Because technically they don't have epilepsy, but they're really impaired. Parents don't know how to manage these kinds of things. So being able to talk to someone about it can help them figure out how best to support their child. And also talking to someone about how the psychological aspects or relational aspects of family life have an impact on the young person. And I think that's quite a hard one to say because it can be heard as blaming parents. But sometimes we find that there is a link between problems in the family system and family relationships, which lead to a young person presenting with mental health difficulties, which worsen their FND symptoms. And allowing parents to see themselves as more connected to their children and their children's outcomes actually leads to good outcomes rather than isolating everything as a, oh, this is the FND, but it making it more of a whole family approach. And also allowing parents space to talk about or talk about things that are stressing them out means that less of that stress goes into, I guess, trying to manage their child's health because it can almost become an obsession for parents and they they become overly preoccupied with it. And that to some extent does make sense, but sometimes it can go to an extreme extent where they are making their child, their child's health outcomes worse because of their anxiety about their child's health. Parents need space to process their health anxiety as well.

SPEAKER_02 46:47

I think that's one thing I tend to see is that it sometimes gets to the point where parents find it difficult to separate from that and actually take a step back and you know, so they they it's almost they've gotten so heightened that they can't see how their anxiety is also impacting on the young person's anxiety. So that's that's really helpful. That's great too. And the last question is for an advice for families because there's a lot to talk about, and thank you so much for you know, I'm so happy that we've talked about this because it is one condition that is almost pushed to the back burner, people are not talking about it as much as it should be talked about, and I think that where we're seeing many more young people coming up with F and D, um, and families are at a loss about what to do, families do need guidance, professionals do need education, people do need understanding. That which is why I'm I'm really pleased that we can talk about this and hopefully continue to talk about it because it's something that would like us to talk about again in the near future. So, for parents, um, a parent that is listening who is worried that they haven't felt taken seriously yet, what's your advice for them for getting properly heard? What would you advise parents who, you know, they they're thinking, oh, we've kept going to having all this test? And I think we've touched on some of that in the talk. Is do you have any advice for families going through this process?

SPEAKER_01 48:28

Because it is such a difficult thing for families to go through. And again, that theme of being dismissed is always around. So I think that if I if I give generic advice, it it might also lean a bit more towards the the blaming side. Because I actually think that if I was to give a piece of advice, it would more be about finding a way to trust your doctors and the healthcare professionals involved in your care, and also having maybe maybe having a more open and forgiving approach because sometimes doctors or people who work in healthcare get things wrong, especially around FND. And it's a really horrible thing to say that this will happen, it will keep happening, I think, for a while. But being more open to building a relationship with your healthcare team, even if they get things wrong sometimes, and also finding to let your child have a bit of a normal life as well, because I know parents really want to get to the bottom of what's going on with their child, but the more determined they are to do this, the less their child will have normal experiences or a normal life. So yeah, I I guess it would be trying to maintain some normality at home.

SPEAKER_02 49:58

Yeah. Thank you, Sergio. And I think that um one of the take homes for me from this, which again I would also add to like families to even if their doctors haven't brought it up, um, them looking out for any mood concerns or anxiety concerns and bringing up it up with the doctor early as well, because what we know is and what we we know uh happens is that these things are sometimes not discussed to the end, but the earlier young persons can seek um some help or get, even if it is to have a conversation, um sometimes it's it's not you know, it's not clear whether there's anything going on, but even that access to a therapist to actually go through things and have a conversation sometimes might be the door to helping your young person go through things. So, like you said, you you know, it's there's several take homes from this. One is it's a difficult, complex situation, and I completely agree. As a clinician dealing with this, it's not a straightforward thing, it is complex, and as a clinician, we also have to keep our minds open and not be dismissive of families. And sometimes, as a clinician, we might feel, oh, we've just done this, and you know, they should be happy that you know we've told them there's nothing wrong, but we should see things from the view of families who are having to deal with a young person that's going through this, and how impairing it can be for the young person and the whole family because families might change. I've seen families who've had to stop work because of the presentation of the young person, they've had to change their own lifestyles as well. And so it's not only the young person going through this, it's a whole family, siblings, is everybody in the household going through this, and so we can almost sometimes compact mentalise ourselves into medical, non-medical, but we should see the family on a wider perspective that people are this young person is going through things, and how can we support them to actually get back to a normal life, and for us to think about the psychological interventions early, to be sensitive, and for us to work with schools, with everywhere else to support the child. One of the take-homes is that we really need to do more about making people understanding FND because I think some of this comes from some, you know, understanding or perceptions of what FND is, and so people's response to FND sometimes based on what they think it is and how they approach it rather than looking at it that it's a real disabling condition that this young person is going through.

SPEAKER_01 52:53

And I think one last thing just comes to mind, just to say that it's very hard for us as professionals to put ourselves in the shoes of our patients with FND. But if you try and imagine what it feels like to have an epileptic seizure, how difficult that is already. But imagine being told you don't have epilepsy. Imagine how much more scary that is. So it's it's like the helplessness that makes someone feel like doctors can't even help me. What the hell am I gonna do? Puts them in a state of um even more helplessness. So I think it's actually a really terrifying condition to have, and maybe in some ways more terrifying than if you knew there's a medication I can take, I can do this about it. They can see these signals in my brain that show that it is epilepsy, and trying to put ourselves in their shoes, or however hard it is, means that they will also sense that we understand. And I think young people are very sensitive to doctors saying all the right things, like saying all of the right things you should about FND, but they can sense that the doctor doesn't believe them because in most cases we we struggle to believe in medically unexplained or things we can't see. So I think just yeah, being aware of how sensitive they are to us not believing them.

SPEAKER_02 54:24

Yeah. Oh, thank you so much for that, Saga. Thank you. Yeah, it's been an amazing episode. So, where can our audience find you, our listeners find you, where is a service and where can people connect with you? Because I'm sure quite a number of people would listen to this, families would listen to this, and where can they find you?

SPEAKER_01 54:48

So I work at a clinic in Chelsea called The Soak, and I also have my own independent practice in Highgate, and you can find me on LinkedIn, just Sagal Hassan, and also check out my website sagalhassan.co.uk, and you can find out how to contact me about appointments for psychotherapy.

SPEAKER_02 55:16

Thank you, and we'll be putting this in the um show notes as well, and so when people listen to the podcast, your information will be there as well. Well, thank you, Sagal. This has been an amazing episode, and uh we look forward to having you back.

SPEAKER_01 55:32

Thank you so much for being so open and also yeah, having just the right approach to talking about something so complex because it is hard to talk about.

SPEAKER_02 55:44

It is, it is, and that's why I wanted to talk about it. Thank you. Thank you, thank you. Take care. As we always say, early intervention leads to better outcome, and early intervention can only be achieved by early diagnosis. So, thank you for listening into the series today. Um, I know some of the things we've talked about today would probably have generated some questions or need to see clarification. So I'm happy to take questions and I'll invite you to send your questions to EIM at dracon.com. Thank you for listening.